Wearing off early

Can anyone comment on this? Ever since I was diagnosed 5 years ago, wearing off has been a problem..I started taking Sinemet when I was diagnosed and I believe have been mismanaged since.. I have finally found a neurologist who listens and is compassionate but regardless a patient it seems cannot just call up the clinic and get an appointment even when in trouble. Parkinson's has affected my nerve endings in the palms of both hands, the soles of my feet and lower back..the pain feels like a hot poker and is always a 10/10. It also is affecting my temperature gauge...from boiling hot sweats to icy cold chills...call placed into the clinic will be answered in 3 working days!!! A pump has been mentioned to me and I'm wondering if anyone has had experience with one or knows anything about it..

Thank you so much in advance...I find this forum one of the only helpful places to go to😊

13 Replies

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  • The most common symptoms of polyneuropathy are:

    •Tingling

    •Numbness

    •Loss of sensation in the arms and legs

    •A burning sensation in the feet or hands

    webmd.com/brain/understandi...

  • Thank you for that web site...at least I'm not crazy

  • But it doesn't site Parkinson's as a culprit

    Of neuropathy?

  • Only looking at other possible causes

  • TY

  • Annie, my neuropathy is only in my feet so far. I have taken every test to determine what was the cause, but nothing showed up. My feet were burning so bad, my wife took it into her own hands and found something that might help. Write this down. Every morning she put into a coffee cup:

    one heaping tablespoon of coconut oil,

    one teaspoon of raw honey and

    one teaspoon of powered cinnamon.

    Then I poured in the hot coffee. You don't have to put it in coffee, any liquid that you like and is hot to make the coconut oil melt.

    Within two days my feet stopped burning. Whoopee!

    After about two weeks they started burning again. And for the next two weeks the burning continued. Then my wife read about the two types of cinnamon. I am sorry I don't know those details but it is fairly obvious one type of cinnamon was sourced from natural ingredients and the other is not. When she read about the difference she went to her pantry to see what type she is using now. This is what we found out. My Dr says it is really a double blind study as neither of us knew that the cinnamon would make such a difference.

    For the first two weeks, when the burning went away, she was using the natural type of cinnamon. Then she switched to the non natural cinnamon and my burning came back. Then she read about the natural cinnamon, and started using it and the pain went away the next day. While all of this was going on, I knew nothing about what she was doing.

    I have since learned that those three ingredients help remove inflammation, so they are good for you in more than one way.

    You might want to give it a try. Let us know what you find out.

  • Interesting...TY..

  • please tell me the brand name of cinnmon

  • It is Cinnamon powder Ceylon Organic. Ceylon is the key word.

    The brand we buy is Starwest Botanical

  • Hi Don_oregon_duck,

    I don't think that "natural" is the exact word you want. You are probably referring to the difference between "Ceylon" Cinnamon (also called "true" cinnamon) and "chinese" cinnamon, also called Cassia Cinnamon. All forms of cinnamon except Ceylon Cinnamon contain high levels of coumarin, which is moderately toxic to the liver. For this reason, the only safe form of cinnamon to take in high doses--one teaspoon or more--is Ceylon Cinnamon. Note that most cinnamon sold in stores is the cheaper, Cassia variety. So always check the label!

    REFERENCE: cinnamonvogue.com/Types_of_...

    "Coumarin is a substance that can cause liver damage or complete failure. Only Ceylon Cinnamon has low levels of Coumarin, while all other varieties of Cinnamon have high levels of Coumarin.

    At one stage the German government banned Cassia type. If you are taking Cinnamon for health reasons, then you must and should switch to Ceylon Cinnamon. The European Food Safety Authority (EFSA) established a tolerable daily intake (TDI) of 0.1 mg/kg body weight of Coumarin in Cinnamon.

    REFERENCE: en.wikipedia.org/wiki/Couma...

    "The German Federal Institute for Risk Assessment has established a tolerable daily intake (TDI) of 0.1 mg coumarin per kg body weight, but also advises that higher intake for a short time is not dangerous. . . . "

    "One teaspoon of cassia cinnamon powder therefore contains 5.8 to 12.1 mg of coumarin, which may be above the tolerable daily intake value for smaller individuals. However, the BFR only cautions against high daily intake of foods containing coumarin. Its report specifically states that Ceylon cinnamon (Cinnamomum verum) contains "hardly any" coumarin."

  • You stated it perfectly, dumpelkin, I was hoping someone smarter than me would provide more of the necessary details.

    This forum is so great to have.

  • I'm wondering if I had the same as you. My feet were terribly sore for 5 years ,could hardly walk....also a 10 out of 10 for pain then I was diagnosed with PD and one of my worst symptoms was the sweats. At least 6 X a night and many times in the day. Terrible as sweating made me weak. Now my feet are much better and my sweats have also all but dissappeared. I think LDN has helped me alot plus vigorous exercise everyday. I also take Azilect and a very small dose of sinamet. I see a Chinese Dr and get acupuncture plus some nutrients I take 3 x aday. I still have a long way to go though. I think one day I'll be better...maybe I'm not being realistic but the body can heal itself..... Just try everything that's not going to hurt you

  • I have pain 10 out of 10. In my lower back my right side is bad and arthritis in the back now epidurals help and rytary last longer don't know anything about the pump

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